A Parent's Decision to Use an SSRI for her Young Autistic Son

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Last Updated: June 18, 2003

NOTE: This story is true and was supplied to me with permission by the parent. It is posted anonymously by request of the parent. I send her many thanks for her submission and for sharing her journey.

When my three-year-old son was diagnosed with moderate autism last year, my world changed instantly and without warning. My happy day-to-day life of staying at home caring for my then two- and three-year-old boys, those simple, sunny days filled with Elmo and Pokemon, slipped away as every minute of my life became consumed with countless evaluations and diagnoses, never-ending therapy appointments, worries over financing expensive therapy programs, daily routines of sensory diet and ABA that I ran in my home, not to mention dealing with the fallout of autism itself…it was so overwhelming those first few months. ,br>
I was still reeling from this adjustment and the emotional trauma of autism’s reality that had completely dismantled my life when two key members of my therapy team said they thought I should consider medicating my son with an SSRI (a selective serotonin reuptake inhibitor such as Prozac, Celexa, Zoloft, Paxil, and Luvox).

At this point, I was dangling on the point of a complete emotional breakdown because my schedule was so hectic with appointments, and I was still struggling to accept the diagnosis of autism and figure out just what autism was. Worrying about medications such as Prozac? This was more than I could handle and seemed ridiculous to me. I remember telling my mother, “Put a two-year-old on Prozac?? That’s crazy.” It seemed crazy at the time, yes. But a month later, on a hot August day, that’s exactly what I did, and I did it knowing it was right, even if my initial instincts had told me it was wrong.

The road to making that decision was a difficult one. Stress from my new life with autism coupled with my fears about using medications and uncertainty of appropriate treatments gave me dangerously high blood pressure that landed me, ironically, on an SSRI as well to manage my blood pressure and stress. I had never cried so much in my life as I did those days in August as I made that decision to medicate my son with Prozac, the drug that society seems to think is reserved solely for “crazy people.”

I struggled with this decision, because although I trusted my therapist and neurologist who wanted to medicate my son, I did not trust them enough to follow them blindly. How could I put all my trust in their judgment, when I was struggling so hard to trust my own?

As I was on the verge of deciding to medicate, I was plagued with worries about the use of drugs to treat my son. He was just two years old. What if he doesn’t need it; what if it’s not the right drug for him? Will it pull my son deeper into autism? Will it steal whatever precious gifts he possesses? Will he be so drowsy he sleeps all the time or, conversely, will it throw him into fits of rage? Will it take away my baby? I think this was my biggest fear: that somehow Prozac, this drug for “crazy people,” would be too much for him, or the wrong medication altogether, and would pull my baby farther away from me.

I was so frightened of this drug because of the negative view society in general has of it. I knew the only way to make peace and quiet fear’s silent roar was to educate myself. I had to understand what this medication was. What is Prozac? What does it do? Why this drug? I decided to research serotonin, SSRIs, and the role each plays with autism. I actually became almost obsessed with this, thinking about it every minute of every day, spending hour upon hour reading, thinking, crying, even dreaming of researching autism and medications.

I spent almost an entire month scouring the internet, visiting research sites and on-line journals. At first, I didn’t understand most of what I read. The majority of information available on serotonin and SSRIs is written by experts (physicians, geneticists, psychiatrists, etc.), and it used dense technical language that, at times, even included a fair amount of chemistry in its description of serotonin. I printed out enough articles to fill an entire book, then slowly began an exploration that would soon change not only my view of autism and medication, but my son’s entire world.

I learned that serotonin is a chemical naturally occurring in the body. It helps regulate sleep, mood, body temperature, and sensory integration. In technical terms, it’s a neurotransmitter that sends messages to and from the brain, helping the body to understand what is going on around it and how to properly respond.

It’s a very complex process but works very efficiently for a majority of people. Sometimes, however, the body does not produce enough serotonin or does not properly regulate its release. The result, then, is depression or autism. The major areas affected from a serotonin imbalance in autism are speech and sensory integration, the two areas with which my son has the most difficulty. This realization marked the beginning of my understanding the need to medicate my son. I began to understand his autism as a serotonin imbalance that could be helped with an SSRI…a serotonin imbalance that could be helped with Prozac.

Still, there was the question of the possible side effects. The medical and therapeutic communities have still not performed long-term studies of young autistic children on SSRIs. I don’t think they know yet if there will be any side effects in the distant future. But, at this point I saw my son’s autism as a serotonin imbalance that was affecting his speech and sensory integration and that was, quite literally, devastating his entire life. I knew I had to act quickly, aggressively, and without hesitation if I hoped to bring my son out of the deeply entrenched grips of autism.

I was fortunate in that I was aware of my family’s history with serotonin imbalances that manifested as clinical depression in my direct familial line. I was fortunate that my aunt, who suffered from depression for many years, talked to me openly about depression and SSRIs, which she has used as part of her treatment plan. She assured me that when she took Prozac, it didn’t “drug her up;” rather, it helped her become more of who she was. She also said that she didn’t think it would drug my son up, either, or steal his precious laughter away, that laughter that kept me going through those first hard, dark months of diagnosis and treatment. It wouldn’t cloud the personality I have learned to love so much; rather, medicating with Prozac would probably bring more of that wonderful personality out for the whole world to see.

I listened to my aunt and to my son’s therapist and neurologist. I listened to my own train of thought that led me to see my son’s autism as a serotonin imbalance. I re-read my notes and articles, and once again looked at my books on autism. And I knew, I just knew, that medicating my son with an SSRI was the right thing to do. It had become my opinion that not only was it the right thing to do, but it was cruel not to. I understand the pains of a serotonin imbalance that result in depression, and I know how much an SSRI has helped me, and the difference it has made in my life. It changed the quality of my life; to deprive me of my SSRI when I needed it and to leave me stranded in a world of anxiety and depression when there is a medication available that can help is cruel. I asked myself: How is this different from medicating autism? It’s not, at least not for me. There is a medication available that can help my son and relieve him of the pains of sensory integration problems; there is a medication that can improve the quality of his life; there is a medication that can help him develop normally, to learn to speak, to enjoy playing with children. That medication is an SSRI; to deny him of that would be cruel.

As for the long-term side effects of medicating autism with an SSRI…I began to wonder about the side effects of not medicating. I believed the reason my son was having so much difficulty with autism was because his body was not properly producing or regulating serotonin. When I spoke to him before medication treatment, it was as if he didn’t even hear me. I wasn’t connecting with him. Or, more accurately, my words weren’t connecting with the right places in his brain; what I was saying just wasn’t getting there. Serotonin, the neurotransmitters, weren’t carrying messages properly.

I strongly believed these wrong neural pathways that were forming might become permanent as he grew older, meaning that he would always have difficulty taking in and responding to the world around him. I knew he would always suffer from moderate autism if I did not act quickly to help him form proper channels. With this realization, my focus changed from worrying about side effects if I medicated to worrying about permanent brain damage if I didn’t.

And so, I made the decision to medicate my son with Prozac, even if only for a brief trial of two weeks. I was prepared to pull him off the drug with no notice to anyone on my therapy team should I have seen any negative reactions at all. I had faith in my decision; I knew rationally, intellectually, logically, it was the right thing to do, even though my heart still echoed those fears, “what if…?”

Those fears haunted me for three days as I waited for his reaction to the medication, any reaction that would validate or destroy my faith in this decision. And then finally, the first sign. While I was cooking dinner, something amazing happened. My son was sitting on the floor by my feet playing with pans, and I heard something I had never heard before: He was singing. The words were mangled and sounded like jargon, but the tune was undeniable. My baby was singing “Row, Row, Row Your Boat.”

This was only the beginning for us. My son’s progress is still ongoing. He is now three years old and has been on Prozac for five months. When I talk to him, he now turns to look at me and not only listens, but he responds. He is beginning to use words functionally, letting me know verbally when he is hungry, that he wants his crayons, or would like to watch Elmo.

He has successfully transitioned into private preschool with typical children his own age. I’ve watched him change from a child who simply sat in a corner and cried to a child who now runs into school smiling to greet his teachers. He now plays with children, gives them hugs, and even sits in circle time and sings songs. He’s grown from a child who doesn’t speak into a wonderful boy full of personality who is just now starting to hold small conversations that show his unique character and growing sense of humor.

These changes are amazing and exciting and have come, in part, from the use of Prozac. I am now at complete peace with my decision to medicate my son; now my only regret is spending so many days that long month of August in needless tears. I made the right decision; I can see it every time I look at my little boy.